Tuesday, April 10, 2012

It Is What It Is

By Dawn Brown, NAMI Information and Referral Specialist

Dawn and her son, Matthew

My son was 8 years old the first time a doctor told me he had a psychotic illness. My stunned reaction and the look of confusion on my face prompted the doctor to ask, “Do you know what psychotic means?”

Yes, I knew the meaning of the word psychotic, but I could not imagine it describing my son. I knew him as wildly imaginative, dark and moody, prone to violent temper tantrums, unrealistically fearful and overly attached to me, but psychotic? No way. The doctor went on to explain his clinical findings and advised a complete neurological evaluation to rule out possible medical explanations. If no neurological issues were identified, I was advised to contact a psychiatrist so that my son could begin taking anti-psychotic medications, as soon as possible. That was quite an afternoon; it marked the end of our “normal” life, and the beginning of a journey my son, Matthew, and I are still traveling.

After the initial shock of hearing the diagnosis of psychosis my first reaction was denial. The doctor must be wrong. Then as reality began to come into focus, I experienced the full range of emotions most often associated with grief including: anger, depression and a sense of loss. Finally, I came to an acceptance of my son’s mental illness and began learning all that I could about the disease, treatments, resources and support networks. I became determined to become an effective advocate for my child.

As a parent of someone with schizophrenia, I realized what an important role I played in my son’s wellbeing. If you love someone with a mental illness, you too may be the only person standing in the gap between them and homelessness, jail, abuse or suicide. At times, you may need to be their voice when they cannot speak for themselves or no one listens. Or, you may need to do the leg work involved in locating mental health services and building a support network. At others, you may need to make tough, difficult decisions that break your heart; but, if not you, who?

Being proactive in your advocacy is the best course of action. Hope for the best, but be prepared for the worst. Contact your NAMI Affiliate or State Organization for information, support groups and referrals to local services. Line up a trusted group of professionals: a psychiatrist, therapist, and social worker/case manager. Become familiar with your community mental health center or clinics. Apply for disability assistance, either Supplemental Security Income or Social Security Disability Income (SSI or SSDI) which will make it possible to access Medicaid or Medicare. Learn about supported housing and employment options. There is help available, but resources are limited. Being patient, but persistent with mental health professionals and service providers gets the best results. However, it you believe your loved one is being abused, falsely accused, or discriminated against a lawyer may need to represent their rights. Overtime, Matthew and I have needed to rely on all these resources.

It has been twenty years since Matthew and I began this journey. He is living with schizophrenia, and I am his mom. Schizophrenia has affected every aspect of his life, but it does not define him. Have courage, there is hope.

50 comments:

Anonymous
said...

You are an awesome mom for supporting your child on so many levels. As a mental health professional, I see firsthand how lack of support can impact a person in a huge way. I wish more people had the strength and intelligence you have shown.

Thank you for telling your story. As a parent of a 24 year old son living with schizophrenia I clearly understand the critical role our family has played (and continues to play) in helping him stay healthy and moving forward. The space between doing well and homelessness, jail or suicide is very short. My prayer is for all caregivers to have the strength to provide what is needed.

Very well put. The grief process exactly describes what a parent goes through. It is a loss- a loss of the life that you thought your child would lead, grief for what they may never be able to do/have/be. When the "positive" symptoms kick in, you're in what I call "Go" mode- hospitalizations, med changes, planning. One may think that's the hardest part, but it's not. When the "negative" symptoms set in and you realize your 15 year old can no longer wash her own hair, can recite the constitution but no longer has accessIn her brain to daily living skills... That's some grief right there. Even after acceptance, it can sometimes sucker-punch you when you least expect it.

I have a 13 year old that was diagnosed with schizophrenia when he was 7. It had been a long and trying 6 years. It will be a long 7 more. It is encouraging to hear that success is possible. That there is a future. That on the other side there is life for him.

My son is almost 12 and he too has Schizophrenia. We have been dealing with his mental illness officially since he was 8. The day to day struggle is exhausting. He went from being anorexic (refusing to eat with severe weight loss b/c of OCD and bathroom issues) to gaining 60 pounds in 2 years from the Respirdal. He is a beautiful boy and it kills me to see him suffer the way he does. We live overseas and I just wish we had the support of NAMI here in Israel.

Thank you for this. Families need to be shown how to love, support, and advocate for someone with a mental illness. There just aren't the obvious avenues that give direction! Please keep sharing your advice and story.

I love the saying "It Is What It Is", I have a sign in my livingroom that says that. I am also a mother of a son that has schizophrenia and your words resonate with me. Thank you for your account and hopeful attitude.

I am right there with you. My son wasn't diagnosed with schizophrenia until he was 25 years of age though when he had a major psychotic breakdown. I went through all of the phases of denial and grief and now, my son lives with me and I support him. We have had many ups and downs since then. He refuses medication and refuses to go on "disability" so I help him manage his life the best I can providing him shelter, food and lots of understanding. It's not easy. I don't want to see him on the street (though he has been on a couple of occasions) but for now, he is relatively stable and we take things one day at a time...I can only think about today. I can't worry about what may happen tomorrow.

I took the "Family to Family" class offered by NAMI which gave me tremendous insight into my son's illness and some tools that have helped me calm him. That was about six years ago. I wish my entire family (my daughter, her husband, my parents, etc.) would take this class. I know they would benefit greatly from it and be more supportive of him (& me).

I am also the Mom of a son with schizophrenia. It's been a long journey but he now accepts his illness, takes his medication, sees his therapist regularly, and is leading a full life at age 26. He recently enrolled in a vetreinarian technician program. I applaud your strength as I know what it takes to be the person who supports and encourages a person with mental illness. Just wondering what is your son doing now? Thanks for your story of hope.

I understand your pain. My son was diagnosed at the age of eight. He was put on medication. Now, he is thirty six and self medicating.After being locked up for thirteen years in an institution. He is so pscyhotic that I don't allow him at my apt. I have tried in the past several years to get him help. They said wait until he has an episode. I can't goaround him when he drinks. Everyone in my family is afraid of him. I pray that he get the help he needs before its too late.

Thanks for your testimony. You have written everything I have said to people in the past. I have a son who has schizaphrenia and I to am supporting him on every level. He has a supportive family and healthcare providers. I am a member of Nami and live in New Milford, Conneticut. I nami can get some programs started in that area, I will gladly volunteer.

I to am supporting my son with his battle with schizaphrenia. You have written what I have said to people in the past. We need to set up a support system of family and doctors to help our children. We are there only hope in achieving a quality life. This is a terrible illness, but it will not bring us down. I will have my son hold his head up high and feel good about himself no matter what it takes.

Thank You.

If Nami can set up programs in New Milford, Conneticut I will be the first to volonteer.Mary

What an inspiring story! My child was diagnosed with schizophrenia at age 13 and I have been "fighting the fight" too. It's so nice to know I'm not alone. One thing I've learned is that it is not the end of the world. Like Matthew, my child is living for the good moments and getting through the bad. Aren't we all? It's just a little more challenging. At least we still have our children.

What is really bothersome me about this article is that I did contact NAMI and told them my 7 year old was schizophrenic. They told me psychosis doesn't happen in children and to find another psychiatrist.

I'm sure this won't be posted because comments are moderated but I couldn't keep silent.

After attempting to provide the help from the mental health community, my 40 yr. old son still refused to go for treatment. I was forced by his actions to "pull back" and allow his behaviors to bring the services to him. It was the hardest thing I ever did FOR him. Consequently, HE has accepted his diagnosis of bipolar disorder, and is getting the services he needs.

My daughter is 8 years older than your son, and there's been much more progress in diagnosis. We accepted ADD/hypersensitivity/'difficult child.' Rejected 'bipolar' as early teen (different doc). She pushed herself to graduate from college, suffered first full-blown psychosis shortly thereafter. ADD has lately been linked w/ schizoaffective disorder, her current diagnosis. I am her advocate, and having to learn when that steps over the line to codependency. (Needed 2 therapists to help me see what that really means. "You must have your own life, too. And, she's an adult, so you can't MAKE her do things.") Sadly, learned lately that 80% of seriously mentally ill become substance abusers, even if properly diagnosed and on appropriate medications (for her, Abilify, not Risperdal), that they actually take, not stuff in a drawer at times, as we found later. I accept I can influence - but not make - her do things. She's in a residential treatment program and doing well. Everyone loves her. I hold my breath.

God Bless you! Your a mom with unconditional love. Your reward will be waiting for you in heaven. My heart goes out to your son. Living with a menal illness is not easy and they didnt ask for it. Happy he has you to stand by him and help him.

I am bipolar I and have 2 adult children w/anxiety disorder, OCD, borderline personality disorder..one has struggle with this since being a child the started more in their late teens and progressed but I understand the struggles and triumphs and a mothers love...God Bless

My daughter had her first onset of psycosis when she was 19. It was an unimaginable nightmare for her and me as her mother. I did not take her to a psychiatrist for almost a year, believing the she could and would be healed by God. When I did have to have the police called because she had a loaded gun, the process began that would continue for 10 years. Now, I know when she is about to have an episode, and I tell her that we need to go to the hospital. I feel your pain, and without the support of NAMI, her stepdad and I would not have made it through. We know that this cannot be cured, but I will always be there for her. God Bless you and thank you for sharing.

im a peer advocate for consumers of mental health my name is jarad and i loved the line in the blog "if im not going to do it than who is?" i fully support this statement. i hope others follow in your footsteps and save lives. #livingwithschizophrenia2

My son has the same illness.He has been diagnosed one year ago and has been in the hospital twice.It is such an dramatic change in everybodies life that I cannot even begin to eplain it.I Take care of my son and I am his protector. We do one day at a time and I do hope that the research done into brain disorder will bring forth a newer and better medication. That is my hope.

Thank you for sharing your story. There are so many of us that have traveled this road; yet so many stories go untold. As previously indicated, you are a dedicated, supportive mother who won't give up. I applaud you for taking parenting seriously, even at its hardest. Matthew is lucky to have you but possibly more important is that we can tell that you are happy to have him. I admire your strength.

I wanted you to know how much your bravery and Wonderful Heart has touched me & what a Incredible job you did in your article. My mother had the same illness. There is so little help or advice to be found and you did such a amazing job I know it will help so many people.I wish for your son many friendships and lots of love in his and your life.Thank you

My daughter first showed serious signs of mental illness when she was 10, just after a severe strep infection, but it took over a year to get a diagnosis and treatment. Constant advocacy with a number of agencies and schools resulted in a discontinuous patchwork of treatment. No provider ever attempted to work with my daughter on acceptance or on coping with issues such as stigma and side-effects of meds. Now she's 19, homeless and will not have contact with me. You are a fabulous Mom, but I think also fortunate. The system needs to treat children with psychosis as children and not as adults with psychosis. The system needs to treat children in the context of a family and not as independent adults with the right to make their own treatment decisions. Children should not be separated from their parents when hospitalized and terrified. There should be more stories like yours and fewer like mine. Best wishes to you and your son.

i am 26 years old and it was ten years ago that i would enter the journey of mental illness. it was very difficult for my mother to understand even though she suffered from anxiety and depression herself. i would be misdiagnosed with multiple mental illnesses. i am currently undergoing tests for temporal lobe seizures and they cause symptoms that relate to schizophrenia. it's been a long road and it will continue to be for the rest of my life but i feel as if i am close to some answers. it is so important to have a strong support group and i admire your strength and unconditional love that you have for your son. he is so lucky to have you. best of luck to the two of you. =)

Wow - I am so encouraged by reading your article.My journey with my son (19) is just beginning and I am looking for anything that I can get my hands onto educated myself. I am in the grief stage of missing my son whom the past 19 yrs has been an athelete,had a great sense of humor and a wonderful son. Just this past February is when everything started to unravel. I am very sad most days, but I will not give up on him. I am digging deep for the strength that is needed to be here for him.... Thank You so much for this writing!!

This was such a timely reminder to me to stay strong . . . We have a 14-year-old son who has been diagnosed with schizophrenia. I am holding on as best as I can, but am running out of emotional energy to deal with the daily demands of his emotional state. He is now taller and stronger than me, and if my husband isn't in the house, I am apprehensive about disciplining him because of what might happen. I hope that there is some improvement as his hormones stabilize, but not even sure if this is realistic. Thanks for a bit of positive news that things may be more manageable in the future.

In February, my 17-year old son experienced his first episode with erratic behavior when he broke the law and was picked up by the sheriff’s dept. and faces criminal charges. The next 28 days was extreme for my son at the Juvenile detention, he was acting out cause he was scared of what is happening to him and want to come home. He would yell become violent which resulted in detention taking away his visits, he never started school, he didn’t not have any books or tablet and something to write, was not allowed to segregate with the other teenagers. Totally isolated. I am very frustrated with the system. They did nothing for him when was experiencing hallucinations, delusions and erratic behavior. They thought he was faking, until he tried to escape and added two more charges. Then they believed me and sent him to an Adolescent Psyche unit. We were there for three weeks; the first week and a half was rough, detention seemed to traumatize him, but with me, there he built the trust with the therapist’s he recognized and was working on his “triggers” (Adult Males). He was doing very well and was in a good place with his healing and retraining his thoughts. He was trying to help the newer children brought to the hospital and mentored them to adjust a little better. When he turned 18 this month he was too old for the facility and had to be moved out, the next day they sent him to the State Hospital, which we are now experiencing a very painful time. The last time I spoke with him was on Monday, and he was hanging in there, but I could tell he was nervous and scared. In the Hospital, it is a male setting with variety of ages. He is the youngest. Acted out on the second day, probably over stressed with the move, not including the men. (Trigger). They have kept him lock-down, isolated and in restraints for most of the day since this past Tuesday. The other day they had him restrained for 13 and half hours. We are still on week one, I am having a very hard time, oh’ but I would change places with him in a heartbeat, so he don’t have to go through any of this. I cant even see him until my background clears, and I haven’t talked to him in 5 days,” today”, because he cant use the phone. He has yet to add me on the authorized list to communicate with all parties involved as his advocate. Very frustrated, exhausted and extremely upset with our system. He is still a child, and the same kid that was to graduate high school in June and attend the community college in the fall. He loves to play basketball write lyrics for raps, and dancing. So please say a prayer for us through this process, give him/us the strength to conquer our way on our path to healing; I can hardly wait until I see him walk through the front door again with his beautiful smile. He is always happy, respectful and loves his grandma.

I just finished reading "Ben Behind his Voices." An excellent book detailing a woman's struggle with a difficult teen and through her son's diagnosis of schizophrenia. I have a relative with schizoaffective that I'm trying to help from afar. Quite a difficult task. Good luck to you all.

Like so many of your comments I too have a son with paranoid schizophrenia. I am amazed that the state has such little help for persons with a severe mental illness. I have tried everything possible and yet after 10 years my son is once again in the state hospital going on 76 days. God Bless our children and those parents that endure the most horrific illness to humankind!

Thanks for sharing your story. While much of what you wrote rang true for me, the fourth paragraph really hit home. Sixteen years ago I took over the affairs of my brother who has schizophrenia. I have come to fully appreciate the phrase "my brother's keeper". When praised by others for my efforts I simply say "If not me then who" and try to use it as a lead in to a teaching moment on the system of care for those living with mental illness. As a NAMI Family to Family teacher I continually try to convince parents and siblings to stay the course and be there for their ill family member no matter how bad things get. And yes, I always, always tell them and everyone else there is hope.

I am downloading your testamonial for my husband to read. I have a 46 yr old son who is just now getting diagnosed. In legal trouble and made to go to mental health services of the law's choice. So much was wrong treatment by law enforcement during this process. He was actually beaten up by a cop and had to go to the hospital for treatment. They have managed to use his disability to their advantage and continue to do so. They have the hammer and unless we go to their people, he will be violated. We started him with a therapist of our choice when he left prison 6 months ago and the therapist has really helped hiim. He is now being told he cannot go to that therapist , he will have to quite and just deal with theirs. He has a great report with him and his methods are kind and caring about our son's healthHe has conversed several times with the health people (law's choice). My son has done everything to cooperate as have we. However, I find this action very unprofessional. My son will go to their therapist but wants to continue with the one who has helped him so much for 6 months. In fact, the law's people STILL haven't done anything! We got a lawyer involved once, but are hesitant to do it again as he is on probation and I feel this is their retaliation for doing so. They want everything where they control him him. In fact, they may be concerned about a law suit. It is so difficult with an adult child as we want to support him but not cause him to get hammered with the law. Unfortunately, I am no longer as idealistic about my legal sysem as I once was. We recently had a meeting about his mental health....there is no PLAN. In fact, we were asked to me alone with the health people and they advised the opposite of what NAMI or any good provider states to support the person, read about the illnesses to try to understand. They told me not to do that, and step away and let him handle everything. I just want to cry. My husband was buying into that. I will let him read your statement. I wish you all the best.

What a lucky son you have. I have schizoaffective disorder, and coming from someone who has a mental illness, it is horrible having to deal with this alone. My husband used to support me in the down times, but now he doesn't. It is nice to know there is awesome people out there who still care, even during the down times.

I've just found this thread, and want to thank all of you for your honesty and real perspectives.

And thanks to "heathergm12" for this comment:"I just finished reading "Ben Behind his Voices." An excellent book detailing a woman's struggle with a difficult teen and through her son's diagnosis of schizophrenia."

Since I'm the author of the book, and Mom to Ben, it means so much to me that the book touched you!Randye Kaye

My son has been suffering from Psychosis for years, he has breaks from reality. then if hospitalized he switches to being treatment savvy.. he is now 18 and in the hospital again denying he hears voices.. my fear is that he will end up on the streets homeless, when he was younger his dad would always go sign him out of treatment, and tell him that if he admitted to voices he would be locked up for ever... I am at my wits end I dont know what to do... I am the ONLY one that is there for him. but how much more can a person handle???

Hi, just joined NAMI and read your story. Thank you for posting. I have a 9 year old who is showing the prodromal stage of paranoid schizophrenia. We are trying to build the network now to help him feel safe and loved at home so there is always a relationship here to help support him.

My son was officially diagnosed with schizophrenia this year when he was involuntarily committed to a psychiatric hospital. We've always kind of known there was a problem, but we were just saying "he's quiet, he's shy..." But when he finally had a psychotic break, brought on by substance abuse (alcohol and marijuana) and the diagnosis came, it was still a shock! There is a family gene at play also with my son and in my heart, I always had the dreaded fear this would be the truth....I am still in the grieving phase: it literally feels like a loss of a life, the life you imagined....he will never marry or have a meaningful relationship??? Really? That breaks my heart. I don't want my son to be mentally ill, but it's not for me to decide. As you say, "It is What it is," and we (myself, his father and sister, my sister and brother and of course, our dear boy) are dealing with it day by day. Thankfully, I guess, because he was committed as a risk to himself/others, he is taking an injection of Risperdal every month. Before the hospitalization he was supposed to take it by mouth but was sporadic. His father, whom he lives with, didn't monitor and of course, it didn't work. But now, the voices have stopped, still has some delusions, and the positive symptoms haven't changed much ie he needs to be prompted to take a shower, this is getting better. But he still has a very flat aspect and gives one-word answers. I get the positive/negative symptom thing mixed up. Suffice it to say, I am heartbroken and some days all I do is cry. Other days, I sit at the computer researching; and then there are the days I spend time with my son. I love him so much and there is nothing worse for a mother than to think their children may not be happy. So I am learning....today I joined NAMI. Thank you for your story and I wish you all the luck .....hope, peace, faith...we will survive.

I wanted to add to my comment that when my son was born it was a complicated delivery. After many hours of labor, and he was already two weeks late, there was no amniotic fluid, my water never broke, so I was induced, and then ultimately a C-section, his second day in the hospital he was taken to the neonatal intensive care unit with a temperature of 104.5! He was not dehydrated. He stayed in intensive care for 11 days while he was poked and probed and scanned and tested relentlessly! He was finally diagnosed with renal tubular acidosis which is rare in newborns, and the treatment was just sodium bicarbonate supplement which cured the condition, thank God! But I've always wondered if this in any way could have something to do with his diagnosis of schizophrenia (combined with the family gene)??? Or was he just destined? I've read somewhere that there is a theory about lack of oxygen at birth.....still, though, what's to be done now? Just love him and be his mother and make sure he is getting the help he needs. That's about all we can do.

Thank you for your story. My son is 25 years old as well and was diagnosed with paranoid schizophrenia three years ago. He has been arrested and put in jail twice, been treated for alcoholism and mental illness three times, and completed parole twice. He has never stayed with treatment unless it was part of his parole. He fervently argues against medication, but periodically self-medicates with beer (in a very controlled manager, he knows the consequences), and finds group therapy and counseling a complete waste. As I write, he is moaning upstairs, probably trying to quell the voices he hears. I wish he would talk with me, but won't. We all, who write here, find the mental health system broken. It has been broken a very long time. Realistically, I doubt radical change is afoot. It's up to families to take care of their own, whether they be 10 or 60 years old. I have become heavily involved in NAMI and am on my affiliate's board. It's a great organization and helps a lot of people like me to know that we are not alone. We need that. For 10 years, we have dealt with our son's ups and downs; first it was marijuana. He's wicked smart and was in his last year of college the first time he tried to commit suicide. We give all the love and support we can muster. We are patient people, do our best, and pray he will eventually accept care. Ultimately, it's up to him. We cannot live his life for him. At the least, he has a safe place to live and parents and brothers who love him. He's very fortunate and occasionally and politely he tell us so. Here is the central frustration of this disease, there is earnestness expressed. It's the next step that challenges. I wish the best to all who post here. I am you. Yes, I have friends who are in recovery, too, and appreciate the courage required.

My son who will be 10 years old has just been hospitalized in the psych ward after a very violent episode that left him hurting myself and our children who are 2 and 3. and they said his diagnosed him with a psychotic disorder. I am not sure what this means or what to think, feel or such. Just numb right now.